Public perspective on potential treatment intervention harm in clinical trials—terminology and communication

Rachel Phillips, Dongquan Bi, Beatriz Goulão, Marie Miller, Malak El-Askary, Oluyemi Fagbemi, Curie Freeborn, Maria Giammetta, Noura El Masri, Peter Flockhart, Manos Kumar, Mike Melvin, Dianne Murray, Anthony Myhill, Laila Saeid, Shanice Thomas, Graeme MacLennan and Victoria Cornelius

This work provides a starting point on preferred terminology by patients and the public to describe potential harmful intervention effects. Whilst researchers have tried to seek agreement, public partners endorsed use of different terms for different situations. We highlight some key areas for improvement in public facing materials that are necessary to avoid miscommunication and incorrect perception of harm.